If I have learned anything over these past years as an Ostomate, it is that having a “label” (even one that many do not know or understand) gives you credibility and some gravitas on your road to accomplishment. That is, once people hear I have something that has a title, they can relate to my story. In contrast, for over two decades, I struggled with constant small bowel obstructions, attempts to deal with the obstructions, fear of not being able to save myself…and a myriad of other issues relating to the state of my intestine. One of the most difficult parts for me was being in absolute agony, and having to explain what was happening to my body, since these obstructions didn’t come with a label that might guide a medical professional. Not Crohn’s or Ulcerative Colitis or any other known reason for these frequent bouts, I heard one doctor or resident after another tell me my symptoms didn’t make sense, as if I was a very creative thinker who imagined my misery.
Throughout the years that I was in “battle mode” I wanted to be compliant and “nice” whenever possible. I recognized that if my energy went toward the negative, I would have nothing positive left. And I was so fortunate to have my wonderful family and friends for support, as well as smart and caring medical professionals trying to help me. But at the end of the day, it really was when I realized that I had to be my best advocate, and not stop looking for an answer, that one appeared! I traveled to Boston to see a specialist who taught at Harvard; I traveled to every doctor mentioned at famed New York hospitals; and I traveled to Rochester, Minnesota three times for help. But the small bowel obstructions continued and I was not living my life, or any, for that matter that made any sense.
My 23rd abdominal surgery brought with it the answer I was determined to find, and the reality that I could wrangle my life back to meaningful. This surgery, an ileostomy is not a sexy one, to say the least. Dr. Paul Starker, Chief of Surgery at Overlook Medical Center in Summit, New Jersey, created a stoma (an opening) so stool could pass from my small intestine into a pouch that sits on my abdomen, and is emptied regularly throughout the day and night. The beauty of this procedure for me is that stool no longer backs into the small intestine and creates an obstruction. (This is not to say there are no more obstructions, but they are fewer and less frightening than before, and are usually caused by undigested food.)
So fighting through, always searching for an answer, never being willing to accept what doesn’t seem right, well, those are the times when I am grateful that I am too stubborn to stop. And I am hoping you are the same…the only thing stopping you is…YOU!